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I'm new here. I'm a 30 year woman, also a professional baker/pastry chef, I'm working with flour 40 hours a week, and I suspect I have celiac. I just had my endoscopy yesterday and I seriously need to rant because I had a horrible experience.

A few weeks ago I finally went to my regular doctor to get some blood work done. I have been having inconsistent stools, constipation, random abdominal pains, pretty regular bloating this last year. She initially just said it was probably IBS, but my lab work came back and showed 1: increased lymphocytes in my blood (sign of inflammation?), and she ran the tTG tests, the tTG IgA was in normal range, and the tTG IgG was positive. She said that the positive IgG shows some sort of gluten intolerance, possibly celiac disease, and referred me to the GI for an endoscopy/biopsy.

I had to wait a few weeks for the endoscopy appointment---still eating gluten, and of course, working with gluten... I did a lot of research on celiac which made me realize I've been experiencing other things that could be tied to it. Headaches, back pain, brain fog, joint and bone pain, and over the last 3 years (since i started my bakery job), I've gotten crazy canker sore outbreaks on my tongue a couple times a year.

Fast forward to yesterday---I went to the GI department for my endoscopy and biopsy and it was such an unprofessional experience! My doctor came in and I barely got a word in before they started sedating me. I wanted to tell her about my symptoms, ask how many tissue samples they would take, but all she said was "Well, your IgA looks normal, so it's very unlikely it's celiac disease." It happened so fast and then I was knocked out from the drugs! No mention of the positive IgG result!

Then, I woke up in the recovery room, and the doctor was nowhere in sight, the nurse just handed me a piece of paper that said this:

"Endoscopy results: The esophagus, stomach, and small intestine are all normal. I took some tiny biopsies to confirm no celiac disease." No mention of how many biopsies, and how can the dr. say they're all normal just by looking at them??

and then it said this: "Your symptoms are due to functional dyspepsia and irritable bowel syndrome, benign conditions of the intestinal tract that causes symptoms of pain in the absence of any damage or injury".

Uhm, no! This definitely doesnt feel like indigestion, I don't have acid reflex. Also, there was no talk of my symptoms, so...

What's the deal people? Why did the GI doctor not mention the positive IgG test? Has anyone else had similar bloodwork results to me? Why are they so fixated on IBS when my symptoms seem worse and I have signs of inflammation and possible gluten intolerance??

Any insight would be appreciated while i wait for the biopsy results, (I'm supposed to get them within 7-10 days).

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I'm new here. I'm a 30 year woman, also a professional baker/pastry chef, I'm working with flour 40 hours a week, and I suspect I have celiac. I just had my endoscopy yesterday and I seriously need to rant because I had a horrible experience.

A few weeks ago I finally went to my regular doctor to get some blood work done. I have been having inconsistent stools, constipation, random abdominal pains, pretty regular bloating this last year. She initially just said it was probably IBS, but my lab work came back and showed 1: increased lymphocytes in my blood (sign of inflammation?), and she ran the tTG tests, the tTG IgA was in normal range, and the tTG IgG was positive. She said that the positive IgG shows some sort of gluten intolerance, possibly celiac disease, and referred me to the GI for an endoscopy/biopsy.

I had to wait a few weeks for the endoscopy appointment---still eating gluten, and of course, working with gluten... I did a lot of research on celiac which made me realize I've been experiencing other things that could be tied to it. Headaches, back pain, brain fog, joint and bone pain, and over the last 3 years (since i started my bakery job), I've gotten crazy canker sore outbreaks on my tongue a couple times a year.

Fast forward to yesterday---I went to the GI department for my endoscopy and biopsy and it was such an unprofessional experience! My doctor came in and I barely got a word in before they started sedating me. I wanted to tell her about my symptoms, ask how many tissue samples they would take, but all she said was "Well, your IgA looks normal, so it's very unlikely it's celiac disease." It happened so fast and then I was knocked out from the drugs! No mention of the positive IgG result!

Then, I woke up in the recovery room, and the doctor was nowhere in sight, the nurse just handed me a piece of paper that said this:

"Endoscopy results: The esophagus, stomach, and small intestine are all normal. I took some tiny biopsies to confirm no celiac disease." No mention of how many biopsies, and how can the dr. say they're all normal just by looking at them??

and then it said this: "Your symptoms are due to functional dyspepsia and irritable bowel syndrome, benign conditions of the intestinal tract that causes symptoms of pain in the absence of any damage or injury".

Uhm, no! This definitely doesnt feel like indigestion, I don't have acid reflex. Also, there was no talk of my symptoms, so...

What's the deal people? Why did the GI doctor not mention the positive IgG test? Has anyone else had similar bloodwork results to me? Why are they so fixated on IBS when my symptoms seem worse and I have signs of inflammation and possible gluten intolerance??

Any insight would be appreciated while i wait for the biopsy results, (I'm supposed to get them within 7-10 days).

Thank you!

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Welcome also to the wonderful world of less than ideal medical practice... Many of us here have similar experiences to recount. The closest I've come to collapsing in the past 3 years has been due to shock when a doctor revealed they'd actually read my notes Years of TV wonder medics have skewed our vision, you come to realise that just like any other profession there are some great practitioners but also some hacks, people that are in the wrong job, or simply chronically overworked or having a bad day at the office.

Your regular doctor to be fair has done their bit. The scope experience wasn't ideal and its never nice to feel that they've already made their minds up or don't have a good handle on the case as the comment about the negative IGA suggests. Particularly as it's incorrect, there are some people that test negative for that but positive on IGG or DGP etc.

6 minutes ago, Vanillabean said:

how can the dr. say they're all normal just by looking at them??

They can't in regard to celiac, they can refer to how they appear, but some damage is only apparent via microsopic analysis. So until the results of the biopsies are in all bets are off.

8 minutes ago, Vanillabean said:

Why are they so fixated on IBS when my symptoms seem worse and I have signs of inflammation and possible gluten intolerance??

I think the key to this question and getting your diagnosis lies in your follow up meeting to discuss the results. If the biopsy reveals celiac then it should be straightforward. You need to prepare for this meeting however, have good notes and some questions prepared to nail down the doctors and establish precisely what the scope and tests have revealed, especially if they're inconclusive or negative.

Have your symptoms written down. Ask if the positive TTG has been accounted for.

Check your current test to see if all of these were ran. If not, ask them to explain how they're excluding celiac.

Don't be fobbed off, be confident and ready to assert yourself in getting proper answers or a second opinion!

For what its worth, I think you've found your answer and you're either celiac or non celiac gluten sensitive like me. If so you'll sadly need to leave the bakery, but if you can transfer your skills to gluten free baking you'll find a lot of hungry pastry starved people like me who could become your new customers!

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Welcome also to the wonderful world of less than ideal medical practice... Many of us here have similar experiences to recount. The closest I've come to collapsing in the past 3 years has been due to shock when a doctor revealed they'd actually read my notes Years of TV wonder medics have skewed our vision, you come to realise that just like any other profession there are some great practitioners but also some hacks, people that are in the wrong job, or simply chronically overworked or having a bad day at the office.

Your regular doctor to be fair has done their bit. The scope experience wasn't ideal and its never nice to feel that they've already made their minds up or don't have a good handle on the case as the comment about the negative IGA suggests. Particularly as it's incorrect, there are some people that test negative for that but positive on IGG or DGP etc.

They can't in regard to celiac, they can refer to how they appear, but some damage is only apparent via microsopic analysis. So until the results of the biopsies are in all bets are off.

I think the key to this question and getting your diagnosis lies in your follow up meeting to discuss the results. If the biopsy reveals celiac then it should be straightforward. You need to prepare for this meeting however, have good notes and some questions prepared to nail down the doctors and establish precisely what the scope and tests have revealed, especially if they're inconclusive or negative.

Have your symptoms written down. Ask if the positive TTG has been accounted for.

Check your current test to see if all of these were ran. If not, ask them to explain how they're excluding celiac.

Don't be fobbed off, be confident and ready to assert yourself in getting proper answers or a second opinion!

For what its worth, I think you've found your answer and you're either celiac or non celiac gluten sensitive like me. If so you'll sadly need to leave the bakery, but if you can transfer your skills to gluten free baking you'll find a lot of hungry pastry starved people like me who could become your new customers!

Best of luck

My current blood test from my regular only included the tTG, but I'm not sure why. More questions, but I feel prepared to ask both my regular doctor and the GI doctor.

I agree with you, I think gluten is the culprit...I do feel ready for the challenge of going gluten-free, and I'm already daydreaming about all the pastries I can make. I think it'll be difficult at first and I may have to change jobs for a while (back to office work), but it would be cool to be able to share with other gluten intolerant people. I've even thought of teaching gluten-free/celiac friendly baking classes....

My biggest worry about being gluten-intolerant/celiac is navigating the social side of sharing food with friends and family and going out to eat, and then of course, long term health problems.

But hopefully I'll have a clearer picture in the next week or two, it's just so frustrating having to wait and continue to feel sick.

Thank you for walking me through the process of receiving my biopsy results and for your support!

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I can relate. I had a positive EMA test and a negative ttg IGA test (no ttg igg test as far as I know). I had my endoscopy this week, and I also had no chance to ask the doctor questions beforehand (I also wanted to know how many biopsy samples he was going to take). When I woke up, the doctor told me he didn't think it was celiac. He found lots of inflammation in the endoscopy, and told me it's all just acid reflux (strange because I've had stomach problems for years and only started having acid reflux in the last couple weeks when I was eating a lot of gluten to prep for the endoscopy).

I just worry that the doctor has made up his mind that I don't have it, and so he's looking to confirm that bias instead of trying to stay open to what may be wrong with me. I've been eating gluten-free since the endoscopy to help with the inflammation, and waiting for the biopsy results. Really want a firm diagnosis either way.

Edited April 22, 2017 by gertrude

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Gertrude, Sorry to hear you're going through the same exact thing. It makes me feel less alone to know you are experiencing this at the same time as me. It's a horrible feeling, and I'm already an anxious person so waiting just makes it worse.

You are so right--it feels like a total bias on the doctor's part. They don't even address why there would be any abnormality in the blood tests...just that the IGa isn't positive.

I did email my regular doctor today to ask about the full celiac panel and vitamin and iron blood tests to see if I have any deficiencies. I wonder what my EMA would be if that was included...

I feel annoyed that I didn't even know there was a full celiac panel until after my endoscopy---they just made the referral for the biopsy right away and I wish we had more info beforehand because my copayment was expensive!

I hope you get answers soon. If you're comfortable, could you reply here or message me when you find out a diagnosis? I will do the same.

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Just wanted to chime in about my personal experience. I went for a GI consult because due to my advanced age (over 50 ?), I qualified for a screening colonoscopy. A long history of anemia is what caught my GI's eye. I have a genetic anemia too, so that was always blamed for my anemia (beside being a woman). I tested negative on the entire celiac blood panel -- except the DGP IgA. Luckily my doctor ordered the entire panel. My GI told me that visually I looked good during the endoscopy. However, my biopsies revealed a Marsh Stage IIIB which is moderate to severe damage. So, while it is hard to wait for the biopsies, it is needed for a diagnosis.

If by chance, your results are negative, considering trialing the gluten free diet. You might just be developing celiac disease or you might have Non-Celiac Gluten Intolerance (or whatever they are calling it now).

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I hope you get answers soon. If you're comfortable, could you reply here or message me when you find out a diagnosis? I will do the same.

Yes, I will definitely update you and would love to hear what your experience is. I'm glad I found this forum because you're right--it's nice to not feel so alone. I'm also prone to anxiety--so waiting and worrying is not fun!

Cyclinglady, thanks for sharing your experience as well. I do plan to maintain a gluten-free diet for a while at least if the biopsy is negative just to see how I feel.

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A quick update: I emailed my primary doctor and she is on the same page as the GI doctor, saying the Endoscopy looks normal. Even before we've gotten the biopsy back.

By the way, I should mention I'm dealing with Kaiser in the Bay Area, CA and everything I've found about Kaiser on these forums is horrible and similar to my own experience.

I specifically asked about all the components of the full celiac panel and that I would like to get it and all she said was: "The lab tests are not perfect. Although they may indicate an increased risk for celiac, they are not as specific as the biopsy." So, now we should just ignore the positive IgG? How am I supposed to know if I'm IgA deficient if they don't test for that?

I replied and asked again and she said that Kaiser doesn't offer the full panel. Why not? And I said I want vitamin and iron tests and no reply to that yet.

A quick update: I emailed my primary doctor and she is on the same page as the GI doctor, saying the Endoscopy looks normal. Even before we've gotten the biopsy back.

By the way, I should mention I'm dealing with Kaiser in the Bay Area, CA and everything I've found about Kaiser on these forums is horrible and similar to my own experience.

I specifically asked about all the components of the full celiac panel and that I would like to get it and all she said was: "The lab tests are not perfect. Although they may indicate an increased risk for celiac, they are not as specific as the biopsy." So, now we should just ignore the positive IgG? How am I supposed to know if I'm IgA deficient if they don't test for that?

I replied and asked again and she said that Kaiser doesn't offer the full panel. Why not? And I said I want vitamin and iron tests and no reply to that yet.

Kaiser offers the full panel, but a primary care MD can not order it -- only a GI. Again, a visual is not needed. Damage is usually severe if it can be seen visually (e.g. Scalloping, etc.). Villi are microscopic though.

When you got the referral, you probably should have found a GI on your own by searching through the Kaiser directory and finding one who has some mention of celiac disease in his bio. Too late, but that is kind of how it works. Your PCP does not know the GI docs. The scheduler just makes appointments. So, now, that you have been referred to a GI, you can probably schedule another appointment on your own by passing your PCP. Wait first for the pathologist's report. They might not put it on the patient portal, so get a hard copy for your records. If it is negative and they took four or biopsies, you will have your answer. Then you can consider trialing the diet. If they did not take enough samples, ask for the DGP and EMA tests, including the control test IGA deficiency (which affects 10% of celiacs, but do not quote me on this). You could wait a few years until you think damage is severe enough to find. celiac disease can be hard to diagnose. It can develop at anytime. Don't forget you might have a gluten sensitivity too and not celiac disease.

Kaiser responds well to requests in writing. Try the patient portal first before a registered letter. If they are not following the standard level of care, they are at risk for a lawsuit. Be nice. Say something lame in your letter like, "We had such a nice short visit, so I forgot to ask ....blah, blah, blah."

My own relatively new PCP is still learning about celiac disease. That is okay. At least she has an open mind.

Edited April 24, 2017 by cyclinglady

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I just got a call from the Kaiser GI department. The doctor who performed the endoscopy was supposed to call me with the results and instead the receptionist did. She said "Dr. X says your biopsy was normal and you do not have celiac disease." Word for word, that's it! So not only did I not get to talk to her the day of my procedure, but not at all!

They are printing copy of the biopsy pathology report for me and I'll get it tomorrow. I want to see if it says how many samples they took.

At this point, I still feel like crap, still have symptoms and I'm going to try a gluten-free diet to see how I improve, get blood tests again eventually.

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At this point, I still feel like crap, still have symptoms and I'm going to try a gluten-free diet to see how I improve, get blood tests again eventually.

Thats sounds like a good plan.

Would it help to know that a frustrating experience in seeking diagnosis isn't unusual With your IGG result I'm sure a part of you is still wondering if they are right to exclude celiac. I know just how you feel as I too had a negative biopsy, but by then a gluten challenge had already established how severely it affected me. So I was convinced I would be found to be celiac and in a funny way disappointed not to get the 'official' stamp of approval.

Testing isnt perfect, you've already learned of the incomplete celiac tests offered by some organisations and the biopsy itself can only see so much. If you react positively to the gluten free diet it may mean you're celiac but not yet showing damage in a place they've checked, or it may be that you're non celiac gluten sensitive, which is a label that for a different but perhaps related condition which has only recently been recognised and for which research is still very much underway.

We may not be able to say which but the good news is all of your symptoms:

On 4/22/2017 at 0:19 AM, Vanillabean said:

Headaches, back pain, brain fog, joint and bone pain, and over the last 3 years (since i started my bakery job), I've gotten crazy canker sore outbreaks on my tongue a couple times a year.

were also mine and they all resolved with the gluten free diet.

So don't despair, you may still have found your answer, it just may be a bit wordier than celiac! Keep a journal when you're on the diet, it may help you track down your own answers.

Best of luck!

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I'm already noticing a difference after five days on the gluten-free diet...acid reflux is gone and stomach pain is getting better. I am glad you're going to try the gluten-free diet, Vanillabean, and get copies of all your results. I hope you find some relief from the pain soon!

I'm still waiting for my biopsy results. I did call my doctor's office today and found out the genetic test was positive for a celiac gene (DQ8). My doctor was hoping to rule out celiac with that test, but now it's still up in the air. Still waiting.

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Would it help to know that a frustrating experience in seeking diagnosis isn't unusual With your IGG result I'm sure a part of you is still wondering if they are right to exclude celiac. I know just how you feel as I too had a negative biopsy, but by then a gluten challenge had already established how severely it affected me. So I was convinced I would be found to be celiac and in a funny way disappointed not to get the 'official' stamp of approval.

Testing isnt perfect, you've already learned of the incomplete celiac tests offered by some organisations and the biopsy itself can only see so much. If you react positively to the gluten free diet it may mean you're celiac but not yet showing damage in a place they've checked, or it may be that you're non celiac gluten sensitive, which is a label that for a different but perhaps related condition which has only recently been recognised and for which research is still very much underway.

We may not be able to say which but the good news is all of your symptoms:

were also mine and they all resolved with the gluten free diet.

So don't despair, you may still have found your answer, it just may be a bit wordier than celiac! Keep a journal when you're on the diet, it may help you track down your own answers.

Best of luck!

Thank you, this does feel helpful and reassuring.

Did you end up getting blood tests again after going gluten-free?

Do you have to worry about cross contamination as much as with a celiac diagnosis?

How do you explain it to friends and family? Non-Celiac gluten sensitivity sounds so vague and I know it's dumb, but I worry about people not taking me seriously.

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By the way, I got my biopsy pathology report and the doctor took 2 biopsies, not the recommended 4-6. It says no "significant villous blunting not seen." I don't know if I should laugh or cry---so frustrating.

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I'm already noticing a difference after five days on the gluten-free diet...acid reflux is gone and stomach pain is getting better. I am glad you're going to try the gluten-free diet, Vanillabean, and get copies of all your results. I hope you find some relief from the pain soon!

I'm still waiting for my biopsy results. I did call my doctor's office today and found out the genetic test was positive for a celiac gene (DQ8). My doctor was hoping to rule out celiac with that test, but now it's still up in the air. Still waiting.

That's great, Gertrude! I'm glad your doctors sound more competent than mine. And that you're starting to feel better. I haven't had any abdominal or joint pain in the last few days, and I feel like I have more energy for sure. I've been feeling a little off/dizzy but that might be from gluten withdrawal.

Good luck with everything!

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I'm already noticing a difference after five days on the gluten-free diet...acid reflux is gone and stomach pain is getting better. I am glad you're going to try the gluten-free diet, Vanillabean, and get copies of all your results. I hope you find some relief from the pain soon!

I'm still waiting for my biopsy results. I did call my doctor's office today and found out the genetic test was positive for a celiac gene (DQ8). My doctor was hoping to rule out celiac with that test, but now it's still up in the air. Still waiting.

Gertrude.....just a few comments after reading your posts..........no other disease but Celiac disease will cause a positive on the EMA test. I have never heard of a false positive on that either. It is a test that is done by hand and not by a machine because of the way it has to be done, so having a false positive is almost impossible. Your doctor should have known that. Many people trip just 1 or 2 tests on the panel and they have Celiac Disease. With autoimmune testing, you can test 2 different people with Celiac Disease and they can have wildly different test results.

Couple those with a positive gene test and the likelihood of it being Celiac is almost 100%. The fact that the doc didn't find villus atrophy just means the damage is not extensive enough for them to find.......yet. I am sure they would prefer you to keep eating gluten until that happens but you do not want to do that. So.........after you have been gluten-free for awhile, have them run the Celiac panel again to see if your EMA goes to normal, which it should if you eat very gluten free. With positive gene results, positives on your Celiac antibody testing, and positive dietary response, that is a diagnosis!

I did a gluten challenge for my endoscopy and requested a second blood test after my follow up with the consultant. I never did see those results but my GP said no celiac was indicated:

Which left me gluten free for life, that wasn't an option after the challenge, but with a less satisfactory diagnosis, one by omission rather than the definitive 'you're celiac' one I was expecting.

1 hour ago, Vanillabean said:

Do you have to worry about cross contamination as much as with a celiac diagnosis?

Yes! I have been 'properly' glutened on a couple of occasions but on several more I've detected a change or a reaction based on what could only have been trace amounts. NCGS is as yet poorly understood but patients tend to have more neuro symptoms than digestive. That's definitely been my experience, although it was only after going gluten free that I realised quite how many digestive symptoms I had just been living with as 'normal'.

1 hour ago, Vanillabean said:

How do you explain it to friends and family? Non-Celiac gluten sensitivity sounds so vague and I know it's dumb, but I worry about people not taking me seriously.

Close friends and family get the full explanation. 'I have an auto immune disease similar to 'coeliac etc.' If they stay awake long enough I'll tell them about the less than perfect testing process I went through or the Columbia Med research and the possibility of a blood test soon. They can see the difference between me on gluten and off it so they understand its not all in my head*

If I'm ordering food in a restauarant or asking questions about food prep etc I will often just self declare as coeliac - people are aware of that and understand those requests are medical rather than fad diet based. I don't have any problem doing this, I'm not going to claim that and then cheat on dessert for instance and to be honest I expect once the research is complete the two conditions may wind up alongside others as different faces of the same coin. In the meantime I safeguard my health and avoid getting into a detailed conversation about genuine gluten sensitivity versus faux hipster posturing!

*apart from the bits which are in my head

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That's great, Gertrude! I'm glad your doctors sound more competent than mine. And that you're starting to feel better. I haven't had any abdominal or joint pain in the last few days, and I feel like I have more energy for sure. I've been feeling a little off/dizzy but that might be from gluten withdrawal.

Good luck with everything!

Thanks! You too! I have learned from this experience to take charge of my own health. It's nice at least that we can try the gluten-free treatment without a firm diagnosis or a doctor confirming the disease. I've also felt some of the gluten withdrawal symptoms, and my stomach pain ebbs and flows, but I'm determined to stick with the gluten-free diet to see what a difference it makes.

10 hours ago, Gemini said:

Gertrude.....just a few comments after reading your posts..........no other disease but Celiac disease will cause a positive on the EMA test. I have never heard of a false positive on that either. It is a test that is done by hand and not by a machine because of the way it has to be done, so having a false positive is almost impossible. Your doctor should have known that. Many people trip just 1 or 2 tests on the panel and they have Celiac Disease. With autoimmune testing, you can test 2 different people with Celiac Disease and they can have wildly different test results.

Couple those with a positive gene test and the likelihood of it being Celiac is almost 100%. The fact that the doc didn't find villus atrophy just means the damage is not extensive enough for them to find.......yet. I am sure they would prefer you to keep eating gluten until that happens but you do not want to do that. So.........after you have been gluten-free for awhile, have them run the Celiac panel again to see if your EMA goes to normal, which it should if you eat very gluten free. With positive gene results, positives on your Celiac antibody testing, and positive dietary response, that is a diagnosis!

Gemini, thank you! This was really validating and useful for me to hear. I've felt so confused through this process and just want some answers. If the biopsy results do come back negative, I'm going to follow your advice and do the gluten-free diet with repeat blood testing after a while. If they come back positive, well, then I'll have my answer. I'm supposed to get them back next week.

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By the way, I got my biopsy pathology report and the doctor took 2 biopsies, not the recommended 4-6. It says no "significant villous blunting not seen." I don't know if I should laugh or cry---so frustrating.

Since he did not follow standard of care, complain to Kaiser, and if no help there, the medical board. paper trail, paper trail.

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Rider Settles Dining Complaint Over Celiac Disease ... student who has celiac disease, which is triggered by consumption of gluten. ... and create a “preorder” option for students with food allergies, Carpenito said in a statement.
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